breast cancer

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Oh, and Another Thing

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I married at 31 and started having babies when I was 33. By the time I was 38, we had three bouncing boys. I was getting older, tired and cranky, nearing 40 and seriously contemplated closing down the baby factory. Lo and behold, I was pregnant again.

Once we cleared the genetic screening hoops (our second son has a serious genetic disease), we anxiously awaited the arrival of our fourth, and final, child. We opted not to find out the gender of any of our children. We enjoyed the surprise when they were born. Even with the last child, I didn’t find out the gender because 1) I wouldn’t be able to keep it a secret, 2) if it were a boy, people would say, “oh, too bad,” before the poor guy was even born, and 3) while I knew too well how important a healthy baby was, regardless of the sex, I loved the idea of a little girl.

Miracle of miracles, I had a healthy little girl who is 12 now and just one of our crew. She is not the princess or the revered baby. She’s just #4. Okay, she twirls a lot more than her brothers, but you get the point.

Occasionally I feel a little bad that my daughter has an old mother, although I don’t think she thinks of me that way. I’m just her mom. Having lost my own wonderful mother a few years ago when I was 50, I feel a sense of wanting to impart all my wisdom to my daughter since she most likely will not have a mom for as long as I did. I was diagnosed with breast cancer six years ago, and while I am ostensibly cured, healthy and hoping to live a long life, one never knows what the future holds. I have to bite my tongue and subliminally drop my wisdom bombs. I don’t want her to remember me and think, “My mom was always cramming me with information because she was an old mom who worried about dying.”

I’m older than many of her friends’ moms, but that doesn’t bother me. I may not be as fun as younger moms who have more energy but I was never really that get-on -the floor-and-play-with-your-kids mom anyway.

Here are some things I want her to know:

  1. Read a recipe completely, BEFORE you start cooking.
  2. It’s worth it to pay more for a bra to have a salesperson who knows what they’re doing.
  3. When you order anything online, unless you really need it immediately always pick the regular shipping option – it usually comes just as fast.
  4. Be nice to everyone. If you happen to be popular, you want to be known as the really nice girl, not the mean girl.
  5. Don’t flatter yourself and think people care what you do. They have their own lives to worry about. Even if something happens in your life that makes you the news of the day, you will quickly be knocked down on the news-feed of life.
  6. Love yourself and your body. Everyone has things they wish were different about their body. Play to your strengths. I’m sorry you have bunions already at 12 years old. It’s part of the bad genes I passed on to you. Be thankful it’s your feet that you think are ugly and not your face.
  7. Don’t be a sheep and blindly follow others. Stick to your beliefs and values.
  8. When you have a house, put some lights on timers inside so it looks like people are inside. We were once burgled as a young couple when our house was completely dark, inside and out. Duh.
  9. Don’t be a doormat, to friends or a partner. Have relationships that are authentic and reciprocal.
  10. Don’t talk on your cell phone when in line at a store. It is rude to those around you and especially to the clerk. People don’t like to feel invisible. Smile at everyone.
  11. Have a schedule but be flexible, with yourself and with your children.
  12. Be grateful and express gratitude for what you have. Don’t whine about what you don’t have.
  13. Dress, speak, and act modestly. Be mindful of how you present and carry yourself. It speaks volumes about your character.
  14. Never “reply all” to an email unless it is specifically requested. No need to share the minutiae of replies. If you have to send an email to a large group, use the “bcc” so others can’t “reply all” either.
  15. Honor your father and your mother. Make sure I’m well cared for when I’m old. Two words – chin hairs.

I am aware of the opposite sides of the life cycle that we are on. My daughter is a young, budding teenager with beautiful, taut skin and boundless energy. I, on the other hand, am on the downhill slope which is full of lumps, bumps, wrinkles and if I’m lucky the occasional naps. We learn from each other’s different personalities and experiences, as even this old mom can learn new tricks. I will continue to quietly add to my wisdom list, teaching her with my words and through my actions.

Since my mother died, I often wonder “what would Mom do?” I can usually summon the answer. I hope my daughter will be able to do the same.

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If It’s Not One Thing…

carbohydrates

I am the most compliant patient in the world. Since my daughter was recently diagnosed with Celiac Disease, her doctors recommended that all first degree relatives get tested too. I hadn’t seen my internist in a few years so I had blood work done and made an appointment for a physical. I feel pretty darn good in my middle age with no physical complaints or concerns.

The good news is that I do not have Celiac Disease or Hashimoto’s, the other autoimmune diseases that two of my children have. The surprising finding from my blood work was that I am told that I am “prediabetic.” Excuse me, what?? I was not expecting that, at all, whatever that is or what it meant for my health.

The doctor calmly explained that I should just limit my carbs and get re-checked in six months to a year. Oh, no big deal I thought as I left the visit although I felt somewhat agitated. I realized it was not the end of the world. It was not a fatal proclamation but merely a wake-up call that I could develop a chronic illness if I don’t change my eating habits. I suppose I should be thankful.

I may well get to that place of gratitude but first I had to have a pity party. I wallowed in sadness that I had one more thing to deal with in my life. One child has a feeding tube, another is gluten-free. I’ve had breast cancer so I’m aware of my diet in terms of trying to avoid a recurrence. How much do I have to bear? I had a good cry, felt completely sorry for myself and even went so far as to wonder if my life will be cut short by diabetes or cancer, which are both accounted for in my family and personal history.

The next day, I went to my “board,” seeking support.

“Do you think I could have Munchhausen Syndrome?” I asked my sister. That’s a mental disorder in which a person repeatedly and deliberately acts as if he or she has a physical or mental illness when he or she is not really sick. My nuclear family has many diseases and disorders, is it possible that they were products of my imagination?

“I don’t think you could manipulate blood work,” she sensibly said. Oh, right.

My friends rallied, trying to find the right words to comfort me. One friend lovingly suggested I focus on what I could eat rather than what I should try to cut out.

“No, no,” I told her, “that’s not what I need right now. I’m sure I’ll get to that place but I just need to hear something along the lines of ‘I’m sorry.'”

“Oh [expletive],” another friend exclaimed when I told her about my diagnosis. Now that was just the kind of love I was looking for.

Even my rabbi, who I happened to see, offered this comforting statistic, “AARP says that there are 29 million people in the U.S.with diabetes and 86 million with prediabetes. So you are in good company.”

You see, my late mother had adult-onset diabetes. She handled it with such grace, discreetly checking her blood with nary a complaint. My sister and I have memories of our mom looking at nutrition labels and announcing how many carbs a product had, as we remained blissfully ignorant and uninterested in all things diabetes. It is a very strange experience to feel like I am channeling my mother as I transition to living my nutritional life a lot like she did. It just makes the whole thing even more emotionally loaded for me.

But I’m nothing if not resilient. I’m sure when I lose 20 pounds I will come to love my prediabetes, embrace the diagnosis and become its poster child. Never half empty, thank God my glass will continue to be half full of wine, which fortunately is low in carbs.

 

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The “Joy” of Air Travel

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We recently went on a family trip. It’s easier now that our children are older.  All they need is their screens and some sugar and they are good.  We bring our 15-year-old’s wheelchair, that he uses occasionally, to make it easier getting through the airport.  Adding to the stress of travel is the anticipatory stress of going through security because of my son’s feeding-tube supplies and medications.

On the first leg of our trip, I made the security people aware that I had medical liquids in my backpack. They took my son’s wheelchair and simply let the bag go through the machine – it was so easy.  What a relief! I was not so fortunate on my return flight. I was alone with my two eldest sons on the way home.

Again, they took the wheelchair through. But when I told them I had medical liquids, they pulled me aside and looked at the contents: three cans of formula and a small bottle of liquid medication. I was given a choice.  They could open the cans of formula to test them; but then I would not have formula to feed my son. Or they could search through my bags and thoroughly pat me down.  Really? I’m just a middle-aged lady trying to get from Point A to Point B.

I had no choice and felt like a cornered animal. They searched through everything in my backpack and purse. Then I had to submit to the pat-down.  They called a woman TSA officer over to do the honors.  I wanted to cry. I stood there as she explained what she was going to do. She patted down my body and checked the waistline of my pants. Normally one to find the humor in things, I could find nothing funny about this.  I had to take off my shoes again to be checked. I quietly cooperated when what I really wanted to do was scream. Other passengers tried to avert their eyes but gave me pitying looks, glancing between me and my child in the wheelchair.

It was such an indignity and a dehumanizing experience.

“What’s dehumanizing?” my disabled son asked as he listened to me complain to my other son when it was over and we were walking to our gate.

“It’s when someone makes you feel like you are not a human being, but like an animal or an object,” I told him.

I realize we have an enormous country with thousands of airports. And ever since September 11th, authorities have tried to do many things to make air travel safer. Some things simply give us the illusion of safety.  The TSA workers are just doing their job but they do not make me feel any safer.

Some people may say I should just avoid flying.  I tolerate the basic stupidities everyone must go through to get where I want to go.   I leave my liquid deodorant and hair gel in my checked luggage, even though I think it’s pointless.  I can’t do that with my son’s medical supplies. It’s the senselessness of a one-size-fits-all screening process that sends me over the edge. Are the skies really safer with random, inconsistent screening?

There must be a better way.

 

 

 

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I Guess I’m a Cancer Survivor

Though I don’t always think of myself that way. I had breast cancer four years ago. I was diagnosed from a routine screening mammogram at the age of 46. Stage IIA. I had a lumpectomy, chemotherapy and radiation therapy. I take Tamoxifen daily. I’m “clean” and should supposedly live a full life and hopefully die from something other than breast cancer.

I’m so clear that usually I forget that I had cancer. When I see someone who I don’t frequently see, they tilt their head and earnestly ask, “How are you?”  Particularly people who met me when I was in chemotherapy and was wearing head coverings.  Or when my hair was very short as it grew back.  My husband says he too gets the pointed question, “How’s Susan?”  He always knows what they mean.  Sometimes people are more specific. “How’s your health?” they persist.  I’m sure their questions come from a place of caring and concern.

“Huh?” I reply. “Oh that,” I remember. “I’m fine. That was 4 years ago.”

I mostly forget that I had cancer.  I feel like everyone else who worries about a new lump, bump or symptom they have. I never felt compelled to make “cancer survivor” my primary identity.  I said to my husband, between the bad mammogram results and the actual diagnosis, “If I have breast cancer, I’m not wearing that pink ribbon.”  He got the Seinfeld reference.  I didn’t want to be part of the big walk/run world.  Don’t get me wrong – I appreciate all of the people who train, walk, and raise money for the cause.  I joked that having my friends and family for a mimosa brunch on a “breast cancer event” morning would be more my style.

Sure, I have a scar on my breast and a “tattoo” from radiation therapy but I don’t really see them anymore.  Yes, I have annual mammograms and see my oncologist at regular intervals.  I recently went for a routine mammogram and someone wished me good luck. They meant well, but I don’t view going for my mammogram in that way.  Sure, you can have a secondary breast cancer,  but it is unlikely to come back in the breast.  When I do worry, it’s about a metastatic recurrence somewhere else in my body – lungs, brain, bones.  But I am relieved anyway when the mammogram is clear.  It gives me a sense of security that I am cancer free, for now.

My sister is one of two people in my family of origin who has not had any cancer diagnoses.  She’s waiting for her”cancer turn” in our family.  She feels it’s only a matter of time.  But she doesn’t seem to be fretting about it in her daily thoughts.  It’s just stuffed to the dark recesses of her mind, like the rest of us.

“We’re all hospice patients,” I like to say.  Some people hate when I say that.

“That’s the most half-empty thing you say,” my husband noted of my usually optimistic personality.

But I really think of it as half-full.  I think of life as a trajectory, from the moment we’re born.  I try to enjoy every phase of life I’m in.  I don’t yearn for the past or pine for the future.  Or worry about the future.  I just hope for the best.  Call it denial.  I call it “living.”

A few years before I had cancer, I was hiking in a forest in Alaska.  I was overcome by the vastness of nature and for the first time in my life felt like an insignificant speck of dust in the universe.  This did not frighten me, but rather helped me see my part in the world and feel okay with it.  Am I important?  Yes.  Do people need and rely on me?  Of course.  Will the world go on without me?  Absolutely.

So when I received my cancer diagnosis and worried about my demise, this thought helped me find a little peace. That, and baseball, a game I usually have no interest in.  During that dreadful time before the definitive diagnosis my family went to a baseball game.  And for the first time, I felt comfort in the slow pace, the crowd, and – okay – maybe a beer or two.  I told my sister about my experience and how I thought I may become a baseball fan.

“Yeah, that won’t last,” she said.

She was right, of course.  But I do like baseball a little more than I used to, even though it always reminds me of that time in my life.

As a cancer survivor, this feeling of impermanence is how I live my life.  I feel a certain urgency to impart all of my wisdom and knowledge to my kids (without them knowing it).  I want to avoid them sitting on the therapy couch saying,

“My Mom always talked about dying and was constantly shoving wisdom down my throat.”

Let them go to therapy for the many other ways I will surely screw them up.

I know how lucky I was with my cancer experience.  I am keenly aware of the many people I know who live with cancer as a chronic illness and can’t “forget” about it as easily as I can.  For those people, constant vigilance and treatment make this impossible.  And of course, I can’t help but think about the many people who have succumbed to this disease.

So thanks everyone for all your concern and caring.  I’m fine, for now.